Side effects predictions/experiences

Yes paul, I'm not medically trained but I would be inclined to say that the side effects you are speaking of are from the preds and not the PMR. I stayed on 10 mgs for 6 months but luckily for me I have no side effects other than anxiety, which I have never had before.

as Mrs o has said if your PMR symtoms have gone and you have not experienced them for at least 6 weeks I also would be inclined to start reducing, perhaps, 1 day 10 mgs the next day 9 mgs and stay on that dose for 6 weeks and then if you are well there then go onto 9 mgs for 6 weeks. But as I say I'm not medically qualified. Christina

Hi Angela was just reading your post.  Unlike yourself my appetite stayed the way it was.  Having said that I have put 7lb on.  I think that was very little mobility and copious amounts of chocolate.  Have you tried to lose weight?  I joined a slimming club 2 weeks ago and my first week I lost nothing even though I followed the plan.  

Hello oat and Angela, to change the subject from the thread for just 1 minute. When I was diagnosed with PMR I was already approx 3 stone overweight, an amount put on over the last 4 years. I have been on preds for just over a year now and although I was warned about increase of hunger and therefore in increase in weight, I have never suffered from this side effect, and I'm still on 10 mgs.

last week as part of my New Years resolution I started a diet. It's not a recognised diet but I attempt to reduce my carbs and eat more anti inflammatory foods as well as reduce my general food intake. I have lost 5 lbs. I know that the first week if a diet is always the easiest and most people lose  the most weight then but I'm really optimistic that I wiil succeed. Christina

sorry oat I meant pat! 

I haven't tried dieting Pat, but will consider it when it gets a bit warmer. I gained another two pounds around Christmas time, but I'm five foot three and now nine stone two pounds which I don't think is too bad. I was eight stone five pounds before. The funny thing is my trousers still fit, and I think the weight might be mostly on my upper half where I was previously very skinny. Even so, I hate the fact I'm gaining weight. Like everyone else, I'd love to get off the Pred. I'm not surprised you lost no weight on the diet plan though. Normally if I put a couple of pounds on when on a holiday (as I did in December) it would drop off once I got home and ate normally, but not any more. It stays there and refuses to budge! Angela.

Thank Christina. I think cutting carbs is a great idea and I'd love to give it a try. Watch this space

Hello Christina,  is there a 'recognized' anti inflammatory diet that helps PMR? I would like to know which foods are considered anti inlammatory.  Also, are there any recommended natural anti inflammatory remedies that can be taken along with the prednisone.  I am thinking of curcumin, boswellia, cod liver oil etc.  Or should one rely on the pred. to reduce inflammation. thank you

Hello Padada, I simply googled anti inflammatory diet and pages and pages came up. I eat lots of almonds, we'll all nuts oily fish, beetroot, dark leafy greens, tofu, low fat diary, peppers- green, red and yellow, I made a fabulous ratatouille, tomatoes, ginger, turmeric, garlic, onions, olive oil, blueberries, strawberries, raspberries, tart cherries, although I've not eaten any of them yet, there must be more but they're the ones that I'm using presently. 

When it comes to anti inflammatory 'natural' remedies, just take care that they can be taken with your prescribed drugs, always check. Now wether these foods will work I have no idea but at the very least they are all foods that are good for you and they are recommended by the arthritis society for rheumatoid arthritis, which I know we haven't got but we nevertheless do have an inflammatory condition. Christina 

Padada, like Christina, I researched anti-inflammatory foods  and stuck to as many of them as possible throughout my time on steroids.  I gained around 5lbs in weight on my starting dose of 40mg Pred.

I ate plenty of oily fish (sardines (with bones - good for our bones), mackerel, salmon and trout, beetroot, avocado, garlic and turmeric (the spice, added to suitable meals such as casseroles, risottos, etc. Diuretic foods can help to avoid steroid-induced fluid retention - asparagus, garlic, fennel, melon.

Foods to avoid are refined carbs  which can increase steroid-induced weight gain, for instance white potatoes and parsnips which turn to sugar in our bodies and could add to the risk of steroid-induced diabetes.  Avoid all processed foods.

Coffee, sugar and alcohol can stress the adrenal glands which are already being suppressed by the steroids, so avoiding them can help.

Of course, none of these foods will cure us, nothing does at present, but I did find that if I missed out on my usual few portions of oily fish a week I would notice worsening symptoms.

We had an NHS dietitian giving a talk at one of our PMR support group meetings, and gained lots of helpful advice from her, the best being that dark chocolate is anti-inflammatory!

 

Thanks Christina, if I don't lose weight this week at the slimming club then I am going to reduce my carbs and go for protein and veg.  All in all I would need about 2 stone off.  At the same slimming club I lost 21lbs (in two and a half years) how I did not throw the head up I will never know.  I don't have much of an appetite and people say aren't you lucky.  Not so I'm afraid, I find it more difficult.

You have told the slimming club you are on pred haven't you? It DOES make a difference and they may need to take it into consideration.

I went to a club (Rosemary Conley) a long time ago and lost some weight, but the final "aim" was set far too low and I continued paying full wack and never had any chance to getting to my target weight and lower rates. Plus I could go to any available classes - but the nearest other one was 10 miles. Had I been able to go to a few for the exercise class I wouldn't have minded so much. It did provide a low impact class that got me into exercise though - so it wasn't all bad, just the charges added up! 

Pat, there is  a diet called the green and red diet that is based on protein and veg. My friend is doing it with great success. Basically you cannot have any meat (red) on the same day as vegetables (green). So it's very easy to implement. I think what I'll do is post on the forum my monthly weight loss, maybe if I've had a good month that might inspire others who are dieting. In total I have yo lose 3 stone. Christina

Thanks Angela, I was at the slimming club long before PMR and still found it difficult to lose weight.  I am 5ft 4in in height, I look taller because I have long legs.  I am two and a half stone overweight and will never give up trying to lose it.  It is a very slow process for me and it has been going on for about 10 years or more.  Having been to Endocrinology, went private and then had a gp referral to my local gym and was assigned a personal trainer who worked with me.  I was burning about 560cals an hour.  In the end she asked could she get in touch with my gp and this was not normal.  I had to fill in a food diary every week for 12 weeks, she put me through my paces alright but only lost about 7lb.  I was grateful that at least someone else could see what was happening and it wasn't just in my head.  Was referred back to Endo, every blood test carried out, cortisol level, thyroid and everything was normal.  It can be so frustrating.  Oh and now pred that I am taking but sure God loves a tryer.

I've steadily lost about 2lbs a month. That may sound very poor given the amount of weight I had to lose originally but my GP is delighted with it!

You have to remember that you are on pred which changes your metabolism so slow isn't surprising and you shouldn't get disillusioned. Losing it slowly also means a minimum of wrinkly skin - and it is more likely to be fat that goes. 

My diet is protein and veg but not complicated by "can I have it today?". Very little bread, pasta, rice, potatoes or other root veg besides carrots (not more than a couple of ounces of any one on a day, not 2oz of each!). Meat portions the size of a pack of playing cards and unlimited green leafy and other vegs (courgettes etc), salad stuff (dressed with oil and vinegar and dried herbs) to fill up. 

Using the 5:2 combined with this means dining out isn't a problem - and you don't deprive yourself ever. If I want a dessert - I have it. Just not every day. But I do eat a square of high quality chocolate every day...

Good morning Eileen, yes I have told the consultant at the slimming club that I am on steriods.  She said that you don't put weight on with steroids but it's the increased appetite therefore more food intake that puts the weght on.  We shall see what happens.

Thank you Christina, all information is welcoming and that red and green diet sounds good.  Keep us all informed of your weight loss journey.

Pat

I lost my appetite and still put on weight.

I would be changing my slimming club they obviously have little or no experience with prednisolone.  It was the earliest and most common side effect. 

Hi, thanks for info.  I lost my appetite about 10 years ago, nothing to do with Pred or PMR.  Do you know if the weight gain is due to increased appetite?

Thanks

Pat

Sometimes but not always - that's what lodger meant. She didn't eat much because she lost her appetite but put on stones of weight. 

Some people get ravenously hungry and eat non-stop and there is no question why they gain weight. Others don't change what they eat and still put on weight. A few lucky people lose weight!

I had put on weight because of being unable to move and exercise normally with the PMR, I wasn't on pred so it wasn't that. When I first started pred I didn't GAIN any weight but it redistributed to my middle, the back of my neck and a bit around my face. Then I was put onto Medrol, I didn't change what or how I ate but I gained a LOT of weight, especially around my chest and waist and on my neck and face. 

Pred changes the way your body metabolises carbohydrate and makes your body tend to store more fat and in particular places, often making you more apple-shaped. It also can lead to fluid retention, making you feel and look puffy. That too causes weight gain.

But the weight gain that is associated with pred is NOT ONLY due to eating more because you get the munchies, it is also to do with your body changing in the way it works. I've heard nurses insisting you only put the weight on because you eat more - but they, and your slimming club consultant are wrong I'm afraid.

Thanks Eileen I just needed clarification.  I don't ever feel hungry but I still eat.  This is not due to pred or pmr as I said earlier, I lost my appepite about 10 years ago.  Thanks for your input.

If you don't feel hungry but eat to a programme then it is very easy to eat more than you need - the modern habit of eating at specific times probably contributes to weight gain.

I never eat breakfast under normal circumstances - I didn't eat breakfast as a teenager but started doing so later in life because of all the insistence it was bad for you not to eat breakfast (a theory now shown to be untrue) and people who ate breakfast were slimmer/ate less. I have struggled with my weight for years. Then I saw articles about this change of idea, that some people don't need breakfast, and decided to try it out in combination with the 5:2 diet. It makes no difference at all to what I eat the rest of the day - so, for me, having breakfast added some 200 calories a day that I probably didn't need. I eat dinner at 7.45pm and the next meal I eat is lunch at 1.15pm - and when you read the theory of the 5:2 diet they say that helps you be in a "fasting" state and avoid weight gain. Whatever - since then I have been losing weight, I feel and look well, I am rarely hungry except at mealtimes and I eat when I want to eat - not to the clock. 

Interestingly, if you google BMI calculator and choose the one on the NHS site, having entered the information it asks for on the final page it tells you your BMI - and at the bottom of the page it tells you how many calories you require. Everyone is a bit different, we don't all have the same metabolic rate.

I am currently 70.7kg at 1.55m and that makes me at the top end of overweight, finally not obese. The calorie requirement range they give is 1444-1857. If the calorie count I need is 1450 and I go on eating/drinking 1850 calories, I am taking in 400 calories a day more than I need - that turns into fat deposits. It is enough to put on at least a couple of pounds in weight a month! Or, the other way round: if I'm eating 1850 calories when I need 1450 and I change how much I eat to the lower level - I could be losing 2 or 3  lbs a month.

Once your body learns to utilise your body fat to make up any shortfall in calories (which it is designed by nature to do) then you will start to lose the excess body fat and lose weight. To do that you need to restrict carbohydrate intake - not take it out totally necessarily as in the old version of the Atkins diet, but eat moderate amounts of protein and fat with veggies and salads that have some carb but not a lot so you can eat enough to fill you up and not have a rumbling tum! Then you use up fat stores and not muscles to get your protein intake.

Hi Christina,

the highest natural anti inflammatory is fish oil...I use it a lot for dry eye patients who mostly are women with sub acute infammatory issues. you need to take 3 1000 caps or the same amount in liquid to see the results in most cases   Best of Luck  Doug

Hi Doug,  I have been using flax oil, but fish oil is better for inflammation. Is cod liver oil different from the fish oil you are describing.  I have to soon buy some new 'oil' so this is a good time for me to pick the best one to fight inflammation.  Any specific type/brand fish oil ( i like the liquid)  Thank you, Mary Jane

(There is just so much help on this site!  It is a miraculous site and to all who give their advice - God Bless you)

Hello Doug, thanks for the advise. I was taking o mega fish oils in a capsule up until Christmas, then the tub ran out, I had then just purchased a new calcium, magnesium tablet that also included my RDA of vit d. There lies the problem, fish oils also contain the RDA of vit d so one or other of the pills/capsules had to go because I didn't want to over dose on the vit d. (5 micrograms). I have tried fish oils liquid form and I am violently sick, so liquid fish oils is a no no. Any other advise re the o mega fish oil. Christina 

An RDA of 5mcg for vit D is way out of date - that is just 200 IU. By any standards we require 800 IU, in the winter we make none from sun and there is very little in food except in the USA where orange juice, milk and flour/cereals are fortified. There is NO fortification of food at all in Europe. I've heard doctors asserting you get plenty of vit D from food - you don't. Even if you eat half a pound of oily fish every day of life you're barely getting what you need in your diet. alternatively you could have a 17 egg omelette with mushroom filling...

It is reckoned that, in winter at least, there is no problem with taking doses up to 10,000 IU, 250 mcg unless you already had a very high vit D level to start with. During the winter I take 5000 IU most days and most up-to-date doctors would advise at least 2000 IU (50mcg) for everyone in the winter:

I realise this quote is from the VitD Council who exist as a pressure group to promote Vit D research and supplementation but

"Dr Heaney at the Creighton University Medical Center in Omaha Nebraska, one of the worlds leading authorities on vitamin D recommends that adults should take 5000IU per day to achieve optimal levels. This is also the suggestion of the vitamin D council in the US who state that if you regularly avoid sunlight exposure you may need as much as 5000IU per day.

Dr Cannell of the Vitamin D council in USA recommends 5000IU per day during the fall and winter, and 2000IU per day during the rest of the year." 

No need to worry about taking 2 or 3 lots of "RDA vit D" as it has been set!

Thanks Eileen, I don't eat to a programme or a set time.  My breakfast could be at 11am or 12pm.  My dinner could be 6pm or 7.pm.  I can only eat what I think my body wants or manage.  I do not eat any type of processed food.  I cook from scratch.  I have had 1 slice of wholewheat bread in 2 weeks.  I shall go to my slimming club tomorrow night and see how I do.  I do eat healthy, no fat.  Not to worry but thanks for the info.  

Then you are doing pretty much all you can with diet aren't you. Sounds pretty healthy to me - unless your portions are enormous which if you have no appetite is unlikely. Weight loss - what a nightmare sometimes!

Fingers crossed for tomorrow!

Indeed I am Eileen, it's just a mystery.  It has been going on for approx 10 years or more.  Yes fingers and toes and anything else  that can be crossed for tomorrow night, I will let you know how I do.

Be a bit difficult to drive - and stand on the scales  

lol I know lol  I have enough difficulties trying to balance, I haven't tried those acrobatics yet, don't think I should, mind you.  

Hello Eileen, the above info is most interesting. I could take my calcium tablet and a omega fish oil tablet and they would equal 10 micrograms per day that equates to only 400 Iu, and that amount still falls short by 1600 which is the amount most drs advocate, I have worked that out correctly, haven't I?

thanks christina 

Think so yes!  Currently I am using Holland&Barrett 25mcg/1000 IU. And mostly take 5 of them. 

A couple of years ago a local orthopod did a study here and found over 80% of residents had very low vit D levels - we live far enough south (level with Turin and Conneticut) for it to be possible to produce vit D in the skin at midday most of the year but people are still deficient She recommended 2000 IU/50mcg a day as supplements.

In the USA and Canada some foods are fortified so if you are there a quick label check won't hurt. In Europe there is little other than margarine - except that doesn't really count as "fortified", it has vit D added to bring it to the same as butter!

And a warning: if you need more vit D than you get from the calcium/vit d supplements NEVER take extra combined tablets. Buy plain vit d tablets. I have heard of a DOCTOR telling someone to take extra calcium/vit D tablets - don't, as it gives you far too high a dose of calcium and that is dangerous.

Sorry for delay in answering. My pain is fairly well controlled. I don't have too big an appetite and have finally started to get rid of an extra ten pounds I found someplace. 

Paul

Thanks Eileen. Christina